I got an un-expected surprise this week. I received an invitation to be part of a panel on exercise and nutrition at the CMT patient conference in New York this October. I really excited to meet so many members of Team CMT and the CMT community. Here are the details about the conference.
Cost
$25 for patient and caregivers until June 15th
$35 after June 15th
Location
New York City
October 6, 2016
3 West Club, 3W 51st St.
Patient-Centered Charcot-Marie-Tooth Summit
The goal of the Patient-Centered Charcot-Marie-Tooth Summit will be to expand the role of patients, caregivers and other stakeholders to identify patient-centered measurement tools that are fundamental to research and clinical practice by conducting workshops and panels led by patients and stakeholders. Patients will have the chance to hear the latest in research developments, participate in panel discussions with clinicians, and voice their needs and priorities in regards to CMT research and treatments.
The Summit will be focused on innovative content and bring together top leaders in industry, research, and treatment and give a voice to the patient.
The objectives will be to:
- Educate the participants on the state-of-the-art PCOR regarding Inherited Peripheral Neuropathies (IPNs)
- Serve as a forum for exchange of ideas particularly as they relate to patient outcomes and barriers to implementation
- Illuminate the critical role that patient involvement and PCOR has for advancing IPN understanding and treatment
- Foster development of partnerships between researchers and patients
- Posters and presentations will describe key science performed in field
- Impactful presentations on innovative technology, public policy, and the importance of disease-state awareness to support PCOR and partnerships
We encourage all CMT patients and stakeholders to attend what is surely to be a landmark event.
To register go to:
http://www.hnf-cure.org/cmtsummit-why-attend/
http://www.hnf-cure.org/cmtsummit-why-attend/
**********
Chris
Wodke
Founder
& Manager Team CMT
www.run4cmt.com
Chris is
a triathlete and long distance runner. She is a three time participant of the
Boston Marathon. In 2012 she finished 2nd
at Boston in
the Mobility Impaired Division. She was on the course in 2013 when the bombs
exploded.
She has
appeared three times at the Paratriathlon National Triathlon Sprint
Championship. She was the 2012 and 2014 National Champion Paratriathlon Open
Division Champion.
In 2014 she was the PC Open Champion at the Duathlon National Championship. She has qualified to represent TeamUSA
at the Aquathon ITU World Championship in Chicago
in 2015 and 2016
In 2014 she was the PC Open Champion at the Duathlon National Championship. She has qualified to represent Team
In 2014 she represented the U.S.
as a paratriathlete at the Pan-American Triathlon Championship in Dallas , Texas
She travels
around the country raising awareness of CMT.
She is
the author of the book, “Running for My Life” that details her experience as a
CMT affected athlete.
Team CMT
is a group of athletes and supporters working to raise awareness and to find a cure
for CMT. We have 194 members in 36 states. We also have members in Australia , England ,Scotland , Canada ,
Vietnam , Turkey , Finland ,
Scotland , France , Poland
and Iran .
If you wish to join us visit our web site; www.run4cmt.com
or www.hnf-cure.org
CMT or
Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It
affects over 155,000 Americans (as many as MS). It is a disease of the
nerves that control the muscles. It is slowly progressive, causing loss of
normal function and or sensation in the lower legs/feet and arms/hands.
Symptoms
include; muscle wasting in the lower legs and feet leading to foot drop, poor
balance and gait problems Atrophy in the hands causes difficulty with manual
dexterity.
Structural
foot deformities such as high arches and hammer toes are common.
Poor
tolerance for cool or cold temperatures and many people have chronically cold
hands and feet.
Additional
symptoms may include fatigue, sleep apnea, breathing difficulties and hearing
loss.
Additional Link
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Marathon Bombing
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